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LDN (Low dose Naltrexone)

Posted , 10 users are following.

karen48559
karen48559

Has anyone heard of this being used for pmr/fibro/cfs?

0 likes, 15 replies

15 Replies

  • diane67131
    diane67131 karen48559

    Posted

    Karen,

    Yes, I have. I've spent the last month reading everything I can about it.  I feel pretty confident that it's relatively safe to take, certainly more so than prednisone.  I weaned off of prednisone a couple of months ago but of course I still have PMR so I continue to experience some stiffness and discomfort, which is a nuisance, so that has prompted me to consider it.  Neither my rheumatologist nor GP would prescribe it (I don't think either of them had ever heard of it) but I found an osteopath who practices more of a holistic approach to health who does so I'm meeting with him in a couple of weeks and am going to give it a go.   I'm not on any other medication so I feel relatively safe in taking it.    Are you considering it?  

    • karen48559
      karen48559 diane67131

      Posted

      Hi Diane. I heard about it from a fellow sufferer in the US. I've done a fair amount of scouring the internet about it over the weekend. I'm currently on 9mg pred. Initially I was looking for my husband as he has fibromyalgia and then came across a paper which mentioned pmr. I can't understand why it's not known/used. If only as a trail. It seems a fairly safe drug and costs very little. I can only imagine it's lack of knowledge again. Thinking of discussing it with gp beginning of June at my next appointment. Are you in uk?
  • diane67131
    diane67131 karen48559

    Posted

    I'm in the U.S., New England.   From what I've read, there's no money in it for the drug companies so the reps aren't pushing it and therefore the doctors aren't familiar with it so I believe you're right it is lack of knowledge.  From everything I've read, including studies and comments from those taking it, I haven't come across anything negative other than vivid dreams at first and some anecdotal evidence of you might get sick if you drink alcohol or conversly, you won't feel the effects of alcohol as much.  I've read of people taking it for 11 and 12 years for various conditions and no side effects.   It's worth a try to me.  
    • karen48559
      karen48559 diane67131

      Posted

      Well that just about sums it up eh? No profits = keep it under wraps. I've become very cynical since becoming a pmr patient. I take a very old type of medicine for high blood pressure. It's cheap as chips and works well for me. Without fail every time I have my pressure checked, they tell me there's far better meds out there I could be on. When I decline as my pressure is text book  and I have no side effects from the water tablet and it's a cheap drug to prescribe, they clam up.

      I'd be very interested to hear how you get along with it. I'll let you know my docs response on the 3rd June whewn I hit him with the question.

       

    • patti17783
      patti17783 karen48559

      Posted

      LDN

      Was suggested to me by my primary care Dr. Not my rheumatologist. My rheumatologist seems to be very conservative. I will talk with him about it but l will NOT go off of it. It was life changing for me. I feel So much more like myself being only on 4 mg. of prednisone!! My mood is better , my weight is more in control and I am not fatigued!!

      I started on 1.5 dosage of naltrexone for 14 days then increased the dosage to 3 mg. I had a few weird dreams but honestly they were entertaining.

      I hope that you all try it and that you have as much success with it as I have!!! Good luck

  • patti17783
    patti17783 karen48559

    Posted

    Hello, I have had PMR for exactly 1 year. I started on 60mg of prednisone and worked my way down to 10mg. I was put on Low dose naltrexone 6 weeks ago and I feel fantastic. I am now down to 4mg prednisone!! Besides initially having a mild head with the LDNthere has been no other side affects!!
    • karen48559
      karen48559 patti17783

      Posted

      This is brilliant news Patti. Did you have to ask for it or was it offered? I too have been on pred 1 year starting at 40mg. Reduction has been slow but thats to be expected. 
  • maid_mariane
    maid_mariane karen48559

    Posted

    Can you send me links to studies on it. It's comming up to 1 yr on prednisone and only doqn to 17mg and all the side effects. So sensitive so would like something better.

    Mariane Canada

    • diane67131
      diane67131 maid_mariane

      Posted

      If you google LDN you'll get quite a bit of info and studies.  Also I hit upon some forums where people were trying it and having success. 
    • diane67131
      diane67131 maid_mariane

      Posted

      I guess you can't post a lnk on the forum so I'm sending you a private message.
    • EileenH
      EileenH diane67131

      Posted

      Quite correct - only links that have been approved are allowed. The computer captures them automatically unless it is a link within this site.

      LDN is being used by a lady in Norway where it is used as and when - it isn't approved for PMR in the UK so isn't used. There is a private GP in central Wales who uses it - no doubt, at a price! Many doctors will know about it - it is used in drug addiction. The question comes up every few years - but there still isn't any real evidence.

    • diane67131
      diane67131 EileenH

      Posted

      Hi Eileen,

      Thanks for clarifying that, about the links.  I assumed that's why it never launched but wasn't totally sure.  

      Provided this new doc will agree to a prescription, I'm going to submit to being a bit of a guinea pig and give LDN a try.  Heck, I've tried everything else but the witch doctor, so why not?   

  • helen88071
    helen88071 karen48559

    Posted

    I asked my consultant last month - he had heard of it, but said no actual trials had been done so the results on it were anacdotal - he said he would research further for me and get back to me. (Ireland)
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